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Thread: Feeling helpless after Mum recently diagnosed with MND

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    Unhappy Feeling helpless after Mum recently diagnosed with MND

    Feeling somewhat helpless as my Mum has recently been diagnosed with MND. Want to help her but she has other psychological issues too. She is a chronic hoarder and her house is full (floor to ceiling) with stuff that she wonít let go of. Hard to see a way forward as desperately need to clear her house to allow for easier access but she doesnít want to address that. Has always upset me to see her live like that but it is now so overwhelming to know how to start if she wonít let me help. Iím also trying to juggle a demanding job and being an effective singje mum to two children as am going through a divorce. No other siblings and no-one to turn to for help so feeling lost at the moment. Not sure what to do for the best...

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    Forum Member Terry's Avatar
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    Hi Rainbow and welcome to the forum;

    Sorry to hear of your mums recent diagnoses and her other issues.

    It is natural for you and your mums head to be all over the place but her additional problems, especially the one of hoarding is a big problem. I have seen some of the TV shows.

    Maybe she would accept going to the hospice for one day a week as it's away from her home. Maybe they could make her see sense, it's a long shot but I reckon worth a try. They also do the best they can tog live our lives better.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

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    Hi Rainbow
    Welcome to the forum and so sorry to hear of your mum's predicament . I don't have any answers for you as it needs specialist treatment by a good psychologist . Perhaps if you contact the local social services and speak to them they will point you in the right direction.

    You certainly need loads of help and tackling the hoarding situation is a priority . Maybe more knowledgeable people will be able to help on the forum , sorry I can't help on the subject.

    I wish all the very best with everything

    Love Chris

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    Forum Member Ellie's Avatar
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    Hi Rainbow,

    A warm welcome to the Forum but sorry you've had to join us.

    I agree with Terry's suggestion about the hospice - apart from the physical benefits the OT & Physiotherapist can bring for your mum, she can have emotional and psychological support from the counsellor, practical support from the Social Worker and even some Complementary Therapy, if she attends the Day Hospice.

    Usually she has to be referred by a GP etc, check their website or ask mum's GP/Nurse.

    The hospice will, most likely, give you counselling too and you can chat about your worries to the Social Worker too.

    If mum's mobility were to worsen, the amount of hoarded stuff may cause a real issue.

    My heart goes out to you, it's a lot to deal with on your own. Sending you a big hug,

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

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    Hi Rainbow. I'm so sorry that you have all of your mums problems to deal with at the same time as living through a divorce. With young children and all the associated problems and stress that that can cause you are probably feeling a bit burned out. I cannot help about your mum's hoarding. I think this needs professional help. Maybe your GP would be the first port of call with your mum's diagnosis as well as hoarding. He/she may be able to point you in the right direction. But MND is not well known about, even amongst GP's. My GP told me that he had known nothing about it when I was diagnosed so read up about it. Terry's suggestions about a hospice sound good. Something needs to be done eventually about your mum's home if she is going to be able to stay in it. But if she won't agree to changes she's going to come to the point sooner or later when the situation is untenable. I wish you and your mum much good luck. I hope that you can find support for yourself. This site is a starting point, welcome. Take care. Lynne

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    Hello Rainbow

    Gosh! Just when you think your own life is horrible, you hear of someone else's problems and it makes your own issues seem a lot less so.
    I can only say to you that being involved in this forum has helped me a lot. I don't post a lot but look in almost every day and the support that is offered on a whole range of issues has been a life-saver. You will get support and lots of tips to help you with your mum's MND.
    The hoarding, your divorce and a demanding job; it's not surprising you feel overwhelmed. Please do not feel like you are alone even if it will definitely feel like it sometimes.

    Best wishes

    Boiler x

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    Thank you all for your comments - they are much appreciated. I don’t mean to sound hard done by as I know it must be far worse for Mum given she is the one who has been diagnosed.

    Mum has let me clear two car loads of rubbish from her house but it’s a drop in the ocean and will take ages to make any proper headway. She doesn’t want any outside help as she is ashamed about the state of her house and how she lives.

    I had to tell my children this week as they’d been away with their Dad on holiday. My eldest was quite upset as she is a natural worrier. She was worried that she and her sister (and I) may get it too given that genetics can play a part. I must admit that it scares me too but there’s nothing we can do about it so there’s no point in worrying. The priority now is helping Mum, when she’ll let us help her.

    Thanks again for all your messages - I really do appreciate them as there is no one else I can discuss this with.

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    So sorry to hear about your situation.
    I hope you soon find the support and help that you so badly need.

    Love Helen

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    Hello Rainbow.
    I understand how difficult it must have been to explain to your children about your mother's condition. My heart goes out to your daughter who is old enough to understand that her grandmother has an untreatable illness and how this has effected you too.

    I am a grandmother of two grandsons 6 & 9. I cared for their grandfather for three years and as they live very near they saw him frequently. They loved him dearly and grew up accepting that he was in a wheelchair and needed a lot of care. They learned a lot about being gentle and adapting their play when they were with him.

    I was unexpectedly diagnosed with MND six weeks before my husband passed away. We decided not to tell the children about my illness and to wait and answer questions as they occurred. It was obvious to both children that I was ill because my walking was deteriorating and I had a problem with my right hand. One day my eldest grandson asked me outright if I had MND. His hero was Stephen Hawkings and he had put had two and two together and looked up MND on his computer! I told him that sadly I did have it and he asked me no further questions.

    Sadly, one of the teachers at their primary school was diagnosed with MND and left suddenly. The school organised some fund-raising for the MNDA and decided to give the upper classes (Y4-6) a talk on MND. I was very worried and contacted the MNDA. They sent me some booklets explaining how to explain the illness to young children. I passed these on to my daughter and she contacted the school and explained the situation.

    I need not have worried about the school talk. The matter was dealt with with great sensitivity. My grandson came home and gave me a hug. He has not asked me any further questions.

    The MNDA have two brochures, one for young children and another for older children. I suggest you telephone them and ask them to send them to you. They have been beautifully written by a psychologist and might help you. Children are more resilient than we give then credit so take their reaction one step at a time. I hope that your children come to terms with their grandmother's diagnosis and
    are able to help you to love and care for her as she progresses.
    LOVE Ann

  10. #10
    Forum Member Terry's Avatar
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    Good news Rainbow;

    I thought that she would not do that. Don't know if you could get some van or even a skip. You probably need help and I reckon that there is some person out there that could help as it will be too hard and take months to do it with a car boot.

    But there is headway as you said. Perhaps if you do a couple more and then talk about getting help again. She will soon have people like OT's etc want to visit her and she might need walk aids etc, so even if you do a boot load a day outsiders might still see it.

    I think that there is a lot more sympathy for hoarders since they have been on TV, it's a habit like smoking etc. Anyone that rectifies and stop things like that can hold their head up.

    Many people carry gene's without them developing and others don't have those and still get Mnd. I did start to feel for my children but what's done is do. Most people would probably still have kids, even if they knew they had some of those genes if they really wanted them.

    Love Terry

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